The Science of the Ice Bucket Challenge

There’s a science angle to many pop culture stories, and in the case of the ice bucket challenge, the science is the most interesting part of the summer fad. The idea, after all, is to raise money for ALS, and since there’s no existing cure for the neurodegenerative disease or even an effective treatment to manage it, the public is assuming that the millions of dollars raised will go into scientific research.

So what if it took celebs in wet t-shirts (or naked) to capture the country’s attention? The situation offers a terrific opportunity for explanatory reporting on the research that should allegedly be accelerated by all this dousing and check-writing.

Here are some of the questions that a science reporter can go after: What kinds of research are being done? Is gene therapy still promising? Stem cells? Which drugs are in various stages of testing and how promising are they? Do the experts think money should be spent more on clinical research or do we need to focus on the kind of basic research that will help uncover the cause of the disease? What do we know about the causes of the disease? What is it reasonable to hope for?

ALS research can be extraordinarily compelling. The best story I’ve read on the fight against this disease is this one written by Jonathan Weiner for the New Yorker. It’s more than a decade old, and it’s behind a paywall, but it’s worth it.

Over the last month, science pieces using the ice bucket challenge as a news peg have been hard to find because they’re mixed up among thousands of celebrity-focused stories. (Please send the Tracker links to good science stories on ALS if you’ve seen them or written them.)

In the meantime, here’s what I’ve turned up.

The Washington Post ran with a piece by Jeffrey D. Rothstein, a neurologist and director of the Brain Science Institute, ALS clinic and Robert Packard Center for ALS Research at Johns Hopkins. Actually, as befitting a trendy topic, he contributes a listicle – Five Myths about ALS.

Most were myths that didn’t seem likely to be all that pervasive – that ALS is caused by Lyme disease, for example. The one “myth” vaguely relevant to the ice bucket phenomenon is that “there’s no cure because no company cares about finding one”. Here he brushes on current directions in research and explains that it may take more basic research before scientists hit on effective treatments.

At Technology Review,Courtney Humphries looked into the research world in a story headlined How ALS Could Benefit from a Flood of New Funding. It’s done in Q and A format, the most interesting question being the last: “What are the challenges involved in developing ALS treatments?”

Because ALS is designated as an “orphan” disease (affecting fewer than 200,000 people in the United States), potential treatments have fewer hurdles to pass on their way to FDA approval. But it’s challenging to recruit patients for trials when there’s such a small pool to begin with. What’s more, many drugs that have seemed promising in laboratory research failed in clinical trials…

That’s followed with some interesting material on research using induced pluripotent stem cells – skin cells coaxed to become neurons in this case.

But anyone who thinks that money is going to cure ALS is just dreaming, experts point out.

While several naysayers have come forward since the challenge went viral, Fox’s take is focused on the scientific research world. She doesn’t suggest the ice bucket campaign won’t do any good. But her interviews with Francis Collins and other important players point to an ongoing shortage of public funding.

It’s bad, Collins agrees. NIH has cut in half the number of grants for research funding it approves. “Right now we are leaving about half of the good ideas on the table for lack of resources,” Collins told NBC News. Only 16 percent of applications get funded, compared to 30 percent 10 years ago.

“That’s great science we are missing out on,” Collins said.

And it’s a shame, because studies are giving tantalizing glimpses at what might cause ALS, including damaged genes, new ways to study the disease, including tissue grown from stem cells, and potential treatments. “It’s a massive task,” Collins said. “And unfortunately the resources to carry that forward are severely constrained right now.”

Another researcher interviewed for the story, Jonathan Serody, points to the importance of sustained funding, given that curing ALS is a long-term problem that will go on long after the public has latched onto a new trend.

Fads like the ice bucket challenge are great for raising public awareness, but it takes good science journalists to raise public understanding. Both are important, but the effect of public understanding will last longer.

Kendall Powell

Not to throw cold water on this (ha!), because I do think it’s an extremely important point and a disappointingly low number. And, follow the money.

But, the ALS does not claim to be primarily research focused does it? They are a service organization and they provide extremely beneficial, expensive and (quality of) life-saving services to ALS patients and their families.

Boyce Rensberger

Maybe so, but the message I hear from many ice bucketeers is that they are pulling the stunt to increase research funding–usually expressed naively as “find a cure.” At that, less than half of ALSA’s funding goes for research plus patient services.

John Travis

Well, is that the fault of the association or the public that is hopping on a fun gimmick–many videos I see say they are promoting “awareness”. The association seems pretty transparent in how it uses money (http://www.alsa.org/about-us/financial-information.html) and has a good rating on Charity Navigator. Some people have tweeted the 7% figure but that’s based on revenue that includes local chapters and I wouldn’t expect that to go to research. Whether the association is better or worse than others is a good topic though

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John Travis

08.27.2014

Well, is that the fault of the association or the public that is hopping on a fun gimmick--many videos I see say they are promoting "awareness". The association seems pretty transparent in how it uses money (http://www.alsa.org/about-us/financial-information.html) and has a good rating on Charity Navig...